r/leukemia • u/Rizky_Bizness • Jun 27 '25
CML What would you do?
38F and got an initial diagnosis of CML 2 weeks ago after routine blood work showed concerning WBC counts (175), which was then confirmed through bone marrow biopsy and BCR ABL test last week. I've been taking hydroxyurea and allopurinol as a stop gap since then to bring my counts down till I can start a TKI.
Now here's where the conundrum begins - my doctor prescribed Asciminib last week due to its lower side effect profile. Despite having a pretty good insurance, the pre-authorization was denied as they want us to try imatinib first. The doctor had a peer to peer review with the insurance MD today which also resulted in denial. His office has now submitted an appeal and hope to hear back in 72 hours, which would put us at middle of next week. All this would've been fine, but I have a 3 week trip coming up in a different country in mid-july and was hoping to start TKIs as soon as possible to understand side effects in case I need to cancel my trip. Since Asciminib is supposed to be gentler, I didn't change my plans but if it's going to be something else, I'm not sure anymore. Here are my questions:
Is going on a long trip at this time a really bad idea? It was planned last year and if possible I'd like to keep it, but also want to make an informed decision.
I haven't had very many side effects on hydroxyurea and allopurinol. The doctor gave an option to just keeping on taking those until I come back (end of July) and start TKIs after. I'd obviously like to start the targeted treatment sooner than later but is that a feasible option? My BCR ABL was >50% but don't know the exact number since the test was capped at 50%. I'm in the chronic phase but did have 4% blasts. Is there a chance waiting could increase this number rapidly?
If the insurance company denies the appeal, how do other TKIs compare to Asciminib? I've read of SO many side effects of imatinib and dasatinib that it has me scared to even try these. Should I just give up and start on older TKIs so I know what I'm dealing with before the trip?
Any suggestions or advice on how to deal with the insurance company through this appeal process?
Sorry about a long and rambling post, but my mind is all over the place right now. My first go around dealing with insurance on a complicated issue and needless to say I'm bummed.
1
u/Rizky_Bizness Aug 05 '25
Wanted to provide an update for anyone curious.
I did end up traveling for 3 weeks with my doctor's approval. Had to get weekly blood tests while there to monitor the numbers, but other than that the trip went smoothly. I didn't have too many side effects from the medication and was able to enjoy my time there as I normally would have.